Cardiology appointment, check!

This week is going to be a crazy one and to kick it off, we drove over the pass this morning for Maddie's Cardiology and Nephrology appointments at Children's. It was a looooong day but well worth it. Getting good news never gets old. Her check-up proved what we've been seeing from her, great results and a growing girl!

Maddie has officially 'graduated' from Nephrology...no need to see her as her kidneys have grown well and are finally similar in size! She doesn't appear to have the reflux as she has shown no symptoms and from her renal ultrasound, they don't see any signs/damage from this. She weighed 42 lbs. and is 42 inches tall (80th percentile).

As for her heart, she's finally hit the 90's with her O2 sats, working her way up from 84-88% since surgery. She actually satted 92% in the clinic today! Whoo-hoo! Her echo showed really nice heart function but also two collaterals...crazy enough, these collateral vessels Dr. Chun believes are helping her out this time around. One is off of her aorta (we knew this one was there from her cath last February) and the other lies on the backside of her heart. They don't seem to be bothering her too much, so we won't be intervening until they cause problems. To see them on echo does mean they are getting some substantial blood flow though, in the past, her collaterals weren't large enough to see on echo. Her pulmonary arteries (always have been on the small side) looked fantastic! They've grown!!! As far as her fenestration, (the small hole that is in the conduit) it's still open and she's still depending on it. I was crossing my fingers that it had closed on its own (higher sats) and she wasn't needing it anymore but Maddie just needs that extra "pop-off" to help relieve pressures in her heart. I'm glad shes's getting a bit of a break with having the fenestrated Fontan but we also talked that it would be nice to close it someday. Having it open poses a higher risk for stroke from a blood clot. She would also gain a few more points in her sats with it closed.

And guess who's Fontanniversary is this Thursday? It will be ONE YEAR on the 24th since our sweetheart's last, and hopefully final heart surgery. Wow. I feel beyond blessed and watching this girl thrive is a daily reminder of God's goodness and grace.

Cath date

Got the call from scheduling today...looks like we're waiting until June 3rd for her cath procedure. Dr. Jones is one busy guy and we're willing to wait for him :) Just hope Maddie picks up some energy and an appetite before then. She's just not herself. We'll see what comes of it.

Looks like she's needing a tune-up...

After a last minute cardiology appointment to Children's last week, it looks like Maddie needs another cath. We've been noticing her increased blueness, lack of energy and decreased appetite. I periodically check her sats and heart rate and last Monday, her sats were 74 (which is still in her range) but heart rate stayed in the 70's for a good 5 minutes. Her normal heart rate is in the 120's-130's at rest, so this was low and abnormal for her. I always try to do her sat checks the same (sitting in my lap & reading books), so when I saw this reading with a great tracing, I became concerned and called the nurses line at Children's. They advised that we go see her pediatrician and get another reading. So by at her peds office, she was back to her norm and it left us with nothing to really worry about.

We still followed through with cardiology since we were lucky enough to be squeezed in. Maddie's next appointment was supposed to be in June (6 months stretch from her last). So, my mom and I headed over the pass with her last Thursday for her cardiology appointment. Since Dr. Vernon is on maternity leave, we were able to see Dr. Chun again. He knows Maddie well so that was reassuring. She had the full workup...and the highlight of the day was she was an absolute ANGEL for her echo!!! I was not expecting this since her last dr's appointments included pokes and she's been pretty tearful the last few times we've been in a doctors office. But the memory of her past appointments kicked in when we arrived to the exam room for her EKG and exam. Thank goodness she was such a big girl during her echo because it showed us the possible reasons why she's declined in energy and looks more like a smurf lately. Her pulmonary arteries have not grown and measured much smaller than her last measurements. She has more stenosis in those areas. Dr. Chun also mentioned that collateral vessels may be stealing blood flow again and she could probably use some coils. Dr. Chun advised that we better get her to the cath lab soon for another look in there. So we're waiting to hear from scheduling on when. We should know by the end of this week, I hope.

I was actually relieved after this appointment, even though another procedure is looming in our near future. I always wonder about her heart, always worry about her puny pulmonary arteries and have often thought that her "symptoms" could be from those unwanted collaterals she creates. After her cath last year, where Dr. Jones put in 4 coils, he made the comment that she may continue to grow the collaterals which in turn, decrease the flow through her pulmonary arteries. This can result in the lack of growth for her PA's. They need to grow in order for her next major surgery to work. I'm just glad we're staying on top of this and if it takes a tune-up in the cath lab once in a while, we'll do what it takes.

We were stuck on the pass for about an hour on our way home due to the roads being closed. Here's Maddie enjoying her freedom from the carseat...thanks Nany for coming along too! You're always so much help :)

Maddie also had to wear a Holter Monitor for 24 hours to record her heart's activity. I kept a journal as well to tell what she was up to so it may explain what her heart is doing during certain activities. We should get this Holter study report back within a couple of weeks.

She looked like a little doctor with her pager...it counted down the seconds until her study was through. Then I fed-ex'd it back to Children's! It worked slick although she didn't enjoy it much. She kept repeating to us "doctor's hurt", "doctors off" and "owiees". So goes the life of a heart kid.

Cardiology appointment

Giving daddy kisses while waiting for Dr. Vernon

Last Wednesday, Maddie had a cardiology check-up in Bellevue. She had an echo done as well as a thorough exam and visit. Her sats were surprisingly high, 77% (she's been running in the low 70's at home) and she weighed 24 lbs. and 33 inches in height. It's impossible for the echo-tech to find her Glenn site (same story each visit, wiggly toddler and lots of scar tissue doesn't make it easy) but with the pulmonary blood flow they can see, it looks like the re-plumbing job is still working. Our burning question was when will she need her 3rd surgery...well, Dr. Vernon believes that Maddie will likely be 3 or 4 before her Fontan. That's really nice to hear but at the same time, I wish we could just get it over with. She needs to be around 15 kilos for it (30 lbs.) so we probably do have a ways to go since she hasn't gained any weight for almost 2 months and is just getting busier by the day.

I'm always nervous before her appointments and find myself mentally preparing in case we recieve bad news. Maddie was sick pretty much all of November so I was apprehensive that she'd have such a good report, especially since she's turning more smurf-like each day and the sat monitor at home enjoys 72-74%. Even with the increased blueness, her Card. believes she's doing well. And the best part of the visit was hearing we don't need to come back for 6 months!

She also recieved her first round of the Synagis vaccine today with Jana at our local clinic...2 pokes & 4 doses were given = a $5400.00 immunization! That's just crazy. She'll continue to have these throughout the winter and we're jumping for joy that this is the last season she'll be getting these costly shots!!!

update on appointments with rash girl

Maddie is feeling so much better! At the moment, she's sitting on my lap eating a big spoonful of peanut butter. I hesitated to report on her status since it's been changing so frequently these days. The latest fever, which took us to the ER over the weekend, was the onset of Roseola. This Roseola rash (it's #4 and different from the previous 3 rashes) began Wed. afternoon on her tummy and back. That explains the 4 days of high, unexplainable fevers! I've been singing "rash girl, na-na-na-na-na-na-na-na" (the Batman tune), she loves her new theme song :)

As for her appointments this week at Children's...
Nephrology went fine. She was ultra crabby and did not enjoy her renal ultrasound one bit. Her kidney's have grown, measuring 5.6 and 6.5, they are functioning and now she just needs to have a repeat VCUG at 2 yrs. old to determine if she's grown out of the vesicoureteral reflux since you can't tell this with ultrasound. Her
Bacterim has been changed to 2 mls of Furadantin which is a little spendy!

She was also squeezed into Dermatology while we were there and Dr. Sidbury was able to check out the weird rashes she's had. I had pictures of the past ones. His census is that it's viral related, and when she's come down with these bugs (Metapneumovirus, Stomach flu and the onset of Roseola) she's broke out in a rash. She is a skin sensitive kid and it may be her "warning" to us that she's getting sick, I guess that's nice to know. He does think it's something she'll grow out of. We ended up cancelling ophtamology since she was so tired and we wanted to save her for her card. appt.

As for Cardiology, she was a superstar! I was amazed at how big she was during her echo, such a good girl as long as she had books, bubbles and a Baby Einstein movie to distract her! Her echo looked great, although she does have some veno-venous collaterals and a trivial amount of aortic valve regurgitation but it's nothing to stress about. The systemic, working side of her heart (her left) is doing it's job and that's awesome. Her O2 sats were 77% and EKG was normal for her. Dr. Vernon was impressed with how big she is, 21 lbs. 15 oz. and 31 inches in length, measuring in the 25th percentile! She is happy with Maddie's status, gave her an A+ and also a 6 month pass!!! We won't be back for another heart appointment until next year! Wow, what a blessing and huge relief. Our baby girl has come a long way.

Nany is the hero at the doctor's appointments (both of ours!) She's so much help to me, and Maddie just adores her since she always "saves" her after a procedure or test. I'm always the bad guy, holding her down. That's my job, right? I'm glad "NANEEEE", as Maddie likes to yell, is the hero. She deserves it. We also got in a short chat with Mimi and Mia! She is such an amazing little thing, super cute and smiley just like her sweet momma. We always love seeing them and lucked out having our cardiology appointments the same day. Maddie's not-so-favorite part, the EKG. It is not painful, just annoying.
Here's the big girl during her 40 minute echo

Heart Cath yesterday

The famous Dr. Tom Jones...he's very renowned for cath intervention and so kind too. This was Maddie's third cath procedure and Jones has performed them all. The photo was taken right before we left last night. She was quite puffy around the eyes from all the IV fluids, today she's looking back to normal...many wet diapers later :)

We arrived at the hospital bright and early to check-in, she was scheduled to go into the cath lab by 8:00 and 2 hours later, she finally went back! There were camera difficulties in the lab and the technician that was supposed to be there to fix it was stuck in traffic, so this held up the show. Maddie did great waiting in the pre-op area by taking a little snooze, played with my phone and enjoyed lots of cuddling before her procedure (we did too).
I was able to go back with her into the cath lab (all scrubbed up but didn't get a picture) and help ease her into getting put under...nothing about putting a 1 year old out is easy! She fought the gas mask and when I left, she was in a light sleep with her legs still kicking around! It was neat to see the cath lab and watch the nurses and anesthesiologists do their thing, but a little hard for mommy to hold down her girl against her will. I always wonder what she's thinking as I'm holding her down and saying to her, "it's ok...I know...shhh-shhh...be a good girl...mommy loves you...honey, I'm sorry..." But I do hope there's some comfort when the last face she sees is mine as she drifts off into la-la land.

The cath took 3 hours and Dr. Jones ended up doing a cardiac collaterization with embolization of collateral veins with coils. Whoo, that's a mouthful! In other words, he put in 4 metal coils to clot off some unwanted veins she's created. She had developed some large collaterals off of her innominate vein that were robbing blood and causing her sats to go down. These collaterals that she formed are useless. With her heart's anatomy, her body formed them to get more oxygenated blood to her extremities/lower half of her body since it's oxygen deprived. Her body is trying to "fix" her heart problems yet only causes trouble by doing this. Her sats in the cath lab were 74-76 and when she was finished with the procedure, veins all coiled up in tiny metal springs, her sats were up to 81-84! So coiling off these unwanted vessels helped out!

Here's a picture of one of the collaterals off to the right of the innominate vein...it swirls around, looping and stealing that precious oxygenated blood just received from the lungs. Here's a picture of the coils on x-ray, they'll stay in her forever. The long, skinny 1-inch looking lines are the wires holding her sternum together from her two surgeries.

Dr. Jones was also able to get a good look around her heart (he made 3 entry points/puncture sites: neck, arm/shoulder area, and her groin) and he gave us a wonderful report! Her pulmonary arteries have grown, heart function and pressures looked great, and her Glenn site is fine too! Her heart likes the Glenn flow :) There was a little narrowing at the site of the SVC and the PA but with her future Fontan surgery, the IVC conduit will be sewn into that spot and should take care of the problem. He said that she really looks wonderful and this procedure should buy us some time. In his "seasoned opinion" (his words not mine) Dr. Jones feels that completing the Fontan is better the bigger she is. He feels like the Glenn should be sufficient enough until she's 40+ pounds! We've been thinking her last surgery will be when she hits 30 lbs, so it looks like we may have a longer wait! It's actually a bit of a relief. Miss Maddie is 9.2 kilos, which is just 20.24 lbs...she's gonna have to double in size before that surgery so she may be 4 or 5 when she has her Fontan. It's all on a "need" basis...when she gets bluer, sats stay down, more winded with activity, and overall tired, these will be the indicators that it's time for her Fontan surgery. Dr. Jones' report of Maddie was so nice for my mommy heart to hear. I always wonder what's going on in that little heart of hers and after yesterday's cath, a lot of my anxieties are put to ease. If she looks and acts great, she's probably doing great. Thank you Lord.

This picture shows where the IVC conduit (artificial tube) will be sewn in at Fontan time. The SVC (Superior Vena Cava) is what was sewn to her pulmonary artery from the Glenn, it's her own tissue, not a tube. The branches off of the RPA and LPA go out to the lungs.

Luckily, I was able to go back with her in the first phase recovery room too and she was the feistiest kiddo in there! Her LOUD cry was hoarse (breathing tube causes that) and there was no making that girl happy. I do love this side of her though and feel that it's one factor of why she's done so well with her half-heart. She kept her swollen, puffy eyes on the nurse at all times and screamed when she came near. Poor baby... and yes, we did come home last night! Dr. Jones felt like she looked great after her 4 hours in recovery and didn't see a need for her to stay overnight in the hospital. Yay!!!

Our baby heart friend, Mia, had clinic yesterday so she and Mimi came and sat with us in our recovery room after their appointments. Man, I just love them!!! Mia looks so great and is the smiliest baby I've ever been around. Mimi is hilarious and like her daughter, can brighten anyones day. Time really flew by for us once they arrived.

Since we were starving and Maddie was geared up for her fav mac & cheese, we went out to dinner before our 3 hour drive back home. Mimi and Mia joined us as well and Susie and Teagan too(they were in town for an appt. today). It was a fabulous way to end a long but very happy day :)

Thanks for all of your prayers and kind words. Maddie is sure a blessed little girl!

Here's a short video that explains what a heart catheterization is: Click here to watch.

Cardiology Check-up 1/21/09

Before leaving on vacation, Maddie had a visit to Children's Bellevue with Dr. Vernon. Yes, we got to see our original cardiologist again since her return from maternity leave! Meg's first remarks when seeing Miss Maddie were, "she's HUGE!" since she hadn't seen her in person for 7 months (only in pictures). Maddie has figured out what's up now and started crying the minute we began the appt. She is, in fact, HUGE, weighing in at 8.20 kilos=18.0 lbs!!! WOW! The 28 cal is doing the job plus her new LOVE of feeding herself since she's topping off at around 20 oz a day with her bottles. This puts her in the 18th percentile for weight. Her height is 28.15 inches, 25th percentile. So we were super excited about her growth. She also had an EKG, an echo, and sats were 81%. Maddie has leveled out in the low 80's since her Glenn. We ended up getting a good echo with the help of Maddie lying on mommy's chest/lap with a sucker in hand!!! Hey, whatever works to get a good look at that heart of hers! She devoured it and we were able to get a thorough echo done :) Everything looks about the same, her P.A's are still small, the branch that was narrowing looked about the same and we learned of some new news that she has mild aortic valve regurgitation. The left side of her heart is dilated because it does all of the work so a little leaking is "normal" with her anatomy. We don't have to follow up for 4 months! That's good news in itself!

Appointment Update

Maddie's cardiology appointment was awesome yesterday! Her echo looked good (she was "too busy" to lay still but Ray has some skills getting those pictures she needs!) and her sats were 81, which means they're coming up! As Dr. Chun put it, the Glenn is doing what it's supposed to!!! He was very pleased with how pink Maddie looked as well as how big she's getting, up to 13 lbs. 9 oz. and 25 inches in length. What was new "news" for me yesterday was she no longer has a murmur...I never realized this but after the Glenn and Fontan repairs, she shouldn't have a murmur. Her murmur after birth and after her B-T shunt was so loud from all of the turbulence of blood flow, it was hard telling what was going on in that little heart of hers! Maddie's Lasix med was dropped altogether, so one last med to give! So now she's down to Captopril 3x a day, Bactrim 1x a day, Prevacid 1x a day and Asprin 1x a day. Not too bad! We'll go back in a month for a follow-up.

After her cardiology appt. in Bellevue, my mom, Maddie, and I rushed over to the main campus in Seattle for her VCUG, an x-ray of her bladder and urethra. (Bryan was unable to go since he's getting ready for apple harvest to start.) This test was ordered to rule out whether Maddie has reflux of her kidneys or not since in all of her renal ultrasounds, bright spots have been detected in one of her kidneys. It wasn't a very pleasant test so we were using lots of "tactics" to get her to be calm. While she was lying on the x-ray table, I was standing over her and made a motor noise then my mom did as well. Maddie quit fussing, studied our faces then started making the "bbbbbbbrrrr" noise herself! It was the cutest thing...and she hasn't stopped since! She loves her new trick. So the test concluded that she does have reflux, "mild-moderate". They rate it from 1-5, 5 being severe and Maddie's is a 3. Only her right kidney showed the reflux, immediately after the dye filled her bladder. She's on the Bactrim for this (a prophylactic antibiotic) to help prevent any UTI or kidney infections...so far it's worked, she hasn't had any yet. I'm waiting to hear what the official report says but I'm sure she'll stay on that antibiotic until a further study shows whether it has "fixed" itself. Most of the time it goes away on its own and settles itself I've been told. We're hoping this is the case for Maddie.

The delivery to the ICU went great! It was so fun to drop off the basket of blankets. Maree came out to get them and was very appreciative...they'll be used to make the babies' beds then the mama's can have the blankets after. I'm so excited about it and know it will bring a little happiness to some hard times for families. While there, I got to see Dr. Baden as well. It's always fun to chat with him. Of course they're super excited about Maddie and her great recovery...our cute little rockstar!

Maddie with Ray (our favorite sonographer)after her Glenn in July.

She's off sternal percautions so it's time for the Bumbo chair & tummy time!

Hanging out with me in the kitchen this morning and having lots of fun in her pink, princess walker! Her feet just dangle but she does play with the little toys at least. Boy do her brothers love to "gently" push her around!

Post-Glenn Follow up

Today was Maddie's first cardiology appointment, since surgery. There were many words spoken by the doctors and nurses to describe her today...wonderful, strong, amazing, a superstar, has good genes :), healthy, pink, beautiful, bright eyed and great,great,great! What wonderful news for us to hear!!! We feel so blessed and lucky. Her x-ray looked much better this time, at almost 2 weeks post-op, her heart swelling was way down and there was no visible fluid retained anywhere. So we are dropping 1 dose of the Lasix for now...now she only gets 7 syringes of different meds a day! Her chest tube stitches were removed and her incision looks so awesome...the nurse thought this was her first surgery, not her second sternotomy! Her sats are hanging in the high 70's, we're hoping her pulmonary arteries will grow some and she'll maintain sats in the 80's until her next surgery. The EKG was good and in the weight department, she just maintained, only gaining 0.2 kilograms. Dr. Chun, our cardiologist since hospital admittance before her Glenn, wants to up her caloric intake to 28 cals and maybe she'll gain better. He said it's tough on them when they're healing up as well as trying to gain weight. I pulled her NG out last Tuesday night (she was gagging and vomiting way too much with it in) and she's been consistently taking her minimum since but not reaching her "goal" for her feeds. Obviously, this is just maintaining calories for her, not making her gain weight. Her current weight was 5.76 kilos or 12.67 lbs and height is 63 cm or 24.8 inches. I'm actually excited for the calorie jump. I'm hoping she won't have to be "force fed" with so much volume now. Her little tummy can only hold so much!!! Now let's just hope she'll tolerate the taste. The higher the calories, the thicker, richer and harder the milk is on their tummies I hear. Good thing we have the reflux med for this. So overall, it was a GREAT appointment! We are following up in 3 weeks...wow!

Since our appointment was at 9am in Seattle, we all went over yesterday afternoon. We did a little shopping for the boys at Bellevue Square and had a yummy dinner at the Cheesecake Factory. Love that place! Staying at a hotel is always so fun for Jace and Cade. It was really nice taking Maddie out, strolling around the mall and enjoying time as a family. Life is feeling much more "normal" for us again. Sure feels good!

FAQ'S about Maddie's Heart

Thought I'd answer some questions that I get asked frequently about Maddie and her heart condition. Plus this is a good way for me to remember this part in future years.

*What does Maddie exactly have?
Maddie's CHD diagnosis (Pulmonary Atresia) has affected the right side of her heart. Because her pulmonary valve does not open (she does have one), blood can not get to her lungs to be oxygenated. Because of this, her right ventricle is small, hard and the muscle that surrounds it is thick. It does not pump efficiently since the blood has no where to go but back up to her right atrium, where it just came from. Here's a picture of what Maddie's heart looks like.

Her right ventricle also receives little blood flow to it because her tricuspid valve, the one between the right atrium and right ventricle, is malformed as well. This malformation is another CHD called Ebsteins Anomaly. So it doesn't work properly and the blood just flows between those chambers freely. Amazingly enough though, her pulmonary artery is of normal size which leads our doctors to believe that at one time, in utero, her pulmonary valve worked and blood pumped through there in order for that to develop. She also has an Atrial Septal Defect, ASD, which is a hole between her right and left atrium. This is actually helping her right now, although the blood is mixed which causes her cynosis (blueness). She also had a Patent Ductus Arteriosus (PDA) that allowed the blood to mix between her pulmonary artery and aorta. When her shunt was put in, this was closed in surgery. Lastly, she is classified as a Hypoplastic Right Heart Syndrome (HRHS) baby because the right sided structures of her heart are underdeveloped. It's easiest for me to just describe her as HRHS. So the clinical diagnosis to describe Maddie's heart condition is: Pulmonary Atresia with IVS, Intact Ventricular Septum, meaning she does not have a hole between her ventricles or a VSD. BTW, Maddie's left side of her heart is good and will function normally (as it was made for) and this is a blessing in her case.

I've learned that her defects go hand in hand and in some way are all present because of a domino effect. We can't tell which caused what or really even know if one caused the other, but it's hard to believe that they're all present without some sort of relationship. In the range of right sided defects, Maddie's is a major problem. She is considered in the complex heart defects category and is on the severe end of the spectrum when talking about defects. I found that her particular diagnosis is 3% of congenital heart defects. There are over 35 known congenital defects and they're present in about 1% of live births. So Maddie's is very rare, which makes her that more unique! Her nurses' recording sheet at the doctors office just says "Complex CHD" in the diagnosis box, since there are too many to list...but from what I've researched, this is "normal" when you're in the severe range of heart defects.

*How can her heart defect be treated?
When we received her diagnosis, we were given 3 options: terminate the pregnancy, comfort care (take Maddie home after birth and let her pass away) or a series of operations. I don't recall this conversation with our doctor since we had just gotten the official news of our baby girl's heart and I was completely overwhelmed with so many emotions, I totally blocked this part out. We did quickly learn that her heart defect is fatal without treatment and she would only live a few hours or days after birth without treatment. So, we opted for the open-heart surgeries. These are done in stages and Maddie's passed stage 1. She has the B-T Shunt, a bypass to get blood to her lungs since it can't flow normally through the right side of her heart to get there. The next surgery (4-6 months of age) is called the Bi-Directional Glenn. In the Glenn, the superior vena cava (major vein from the systemic circulation to head/upper body) is connected to the right pulmonary artery. This reduces the workload of the heart since it only has to pump blood to the body, not the lungs anymore. Now blood just flows to the lungs instead of being pumped. Her shunt will be taken down in this surgery. The last stage of surgery is called the Fontan procedure. This is done between age 2-5 and it reroutes blood flow in the inferior vena cava to the pulmonary artery (plumbs in the blood that goes to her body/organs). This would be the last repair. Her defect isn't correctable...but is palliative. When I looked up what this meant, I was down for days. Here's the definition: Palliative care is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than halting or delaying progression of the disease itself or providing a cure. The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness. Wow, I know. It's tough to read this. I always tell people she's in for 3 surgeries but there could be more, just depends on whether Maddie's heart likes it or not. Our last option if these surgeries don't work is a heart transplant. I don't even go there. Getting a transplant is not considered "easier" than the surgeries, believe it or not. Having a transplant is a very complicated thing...tons of meds, uncertainty if the heart will be rejected and a transplant lasts only 10-15 years then another one is needed. Yes, it sounds great "just get a new heart" but it's not. It would be the last resort. So Maddie is on the single-ventricle route of surgeries with her half of heart!

*What is Maddie's long-term outlook after repair?
Of course none of us know our life-expectancy but when you have a child with a critical condition, you look at this more closely. The statistics that are out there are new, since the 1970's. The surgical procedure she's having has only been around since then and has been "revamped" as well over time. The oldest living survivor with her same 3-stage repair is 31 years old and he is a Hypoplastic Left Heart Syndrome diagnosis. I have never found anyone with Maddie's same defect yet. So her "repair" is still fairly new in the medical world. She will be followed her entire life by a cardiologist and will be part of the statistics. I do have faith that with medical advancements, there will be a better way to someday fix her heart for long-term. Our doctor gave us the "assurance" that there should be no reason that she can't live a "normal" life. This always makes me laugh because what is "normal"? Of course, I'm elated to hear this. I do know that with Maddie's heart condition, she will lack physical endurance and will tire easily. Our cardiologist said that she probably won't be the fastest kid on the playground. Little does she know, her mother wasn't either!!! One heart mom friend I've talked to has a little boy with the same repair surgeries as Maddie. She can't imagine what her 1 year old little guy would be like if he had a whole heart! He's a go-getter and she can hardly keep up with him!!! Since Maddie has defied so many odds already, I do believe she may fit in that "go-getter" category. Plus she'll have two big brothers to keep up with. So, I focus on the positives of her...not so much her defect. SHE has proven to us already that she is a fighter, she's tough and the heart that she was born with has HEART. It may not be structurally correct, it may be complex, but Maddie's will and her HEART has been remarkable! I thank God everyday for the heart that he gave my baby girl.

So excited to swing this morning!!!

Change of Plans (for now!)

Our instructions this morning were to call Children's and report to the cardiologist of our game plan for coming over there. Miss Maddie "got wind" of having a hospital stay...guess what, her sats are back up to her baseline (77) and she looks and acts fine, since being home from the ER. She did lose her midnight bottle, but vigorously ate her 3 am great and has tapered off again this morning on her feed. But after talking to the doctor this morning, we agree that we can do the monitoring we need here at home vs. being admitted to Children's for now. I'm very on top of it (poor Maddie) and the plan is to go over and be admitted if she starts having/staying at low sats again. So Maddie continues to call the shots around here...she has since her surprise entrance into the world!

Maddie's BFF!

We had such a wonderful day yesterday. The boys went to spend the day at Nany's while Maddie and I drove down to the Tri-Cities to see our friends, The Maxwell's. Trent and Susie's daughter, Teagan, was born a week after Maddie with Hypoplastic Left Heart Syndrome (the left side of her heart didn't develop properly (opposite of Maddie's CHD)). So put together, our girls have a good, whole heart! Their second and third surgeries are the same to 'fix' their hearts, and they're even on the same time frame for their surgeries at Children's! Anyway, while we were in the NICU, I saw Trent walking through one day and just knew I knew him from somewhere. We ended up bumping into him again and realized that we had high school and college rodeoed together! What a small world. Since that day at the hospital, we've kept in touch. Susie and I have emailed and talked on the phone weekly and this was our first 'playdate' with our girls.

It is such a blessing that we met up. Having someone who shares all of the same feelings, worries, hopes and dreams I have for my daughter is so comforting. No one can completely understand this until you're in it. There is so much to learn with the heart defects that the two of us are conquering the medical world together! I so enjoyed our visit and we're planning our next get-together soon. I don't think anyone could have gotten a word in with the two of us gabbing away all afternoon!!! The girls are both so adorable and what a sweet relationship they're going to share as they grow up...I'm so grateful that Maddie will have someone who will understand her, and her 'BFF' (Best Friend Forever) is only a little over an hour away! Watch out rodeo world, can't you just see these two galloping around on their ponies together! Here's some pictures from our afternoon. Teagan's blog, as well as our other heart friends, is on the left side of this page under "Kindred Hearts". God does work in mysterious ways...putting certain people in our paths who will help us through our trials and only add to the joy in our life! I'm very grateful for the Maxwell's as well as the other heart friends we've met so far in this journey!

Cardiology Appt. #3 Update

Madison had her third follow-up Cardiology appointment at Children's yesterday. Everything is just great! She's chunking right up- 8 lbs. 15 oz. and she's 20 3/4 inches in height, 10th percentile now! If we were to take her gestational age (she'd only be 1 month old, since she was born at 35 weeks) she's in the 25th%, so she's doing just awesome. We couldn't be happier. On a cardiology note, her EKG was fine, her Echo looked good (although she was a wiggle worm) and from what they could see, her shunt looks wide and open. What a relief. Her SATS are beginning to drop though, they were 78 yesterday. Normally she hangs out around 80-82, so we could have just caught her at a low time too. She was taken off her Captopril medicine, which is an ace inhibitor and helps her heart function. I was a little nervous when hearing this, but Dr. Vernon said it's really unnecessary now with where her SAT levels are. So Maddie is only taking her 1/4 asprin daily (blood thinner) and no other meds! I know, it's amazing. Her doctor did want to order a blood test for her to see if she should be getting any supplements, like iron. So we'll be doing that in the next week, other than that, we don't go back for over a month! I hope I can make it to June 25th...it's very exciting that she doesn't need to be seen more often but also a bit scary. We were sad yesterday to say goodbye to our doctor...she's going on maternity leave until mid-Sept, so we'll be seeing a new doctor (Dr. Sesslar) now until she comes back. I'm so glad we have the SAT monitor here at home so if I'm unsure until then, I can check her. It's painless, just a little band that fits around her foot. The SAT level determines how much oxygen is in her blood, and because Maddie's has a lot of mixing of blue and red blood (oxygenated and unoxygenated) her SATS are lower. The number can tell us many things...like if her shunt could be narrowing or if she's having an SVT (arrhythmia, which she hasn't had any), if she's going into heart failure, etc. A normal person's SAT is 99-100. So, heart disease kids (like Maddie) never have a SAT level of 100 but after all 3 surgeries, they can be upper 90's which is great in comparison to 78 (like now). Her next surgery is also dependent on what her SATS are doing. When they are trending downwards and reach the 60's, it's time for the next surgery, along with how her heart looks, the pressures, etc. A cath procedure will be done before her next surgery to determine exactly what needs to be done and it is the most accurate way to tell heart function. They normally like to do the Bi-directional Glenn (her next surgery) around 4-6 months and when the child weighs close to 12 lbs. So, we're thinking that if everything keeps going the way it is, Maddie should have hers in August or September. The doctors also take into consideration getting her surgery done before flu and RSV season hits. Great timing for us! A friend of mine sent me a link to Dr. Cohen's (Chief Cardiothoracic Surgeon at Children's)grand rounds presentation on single ventricle heart defects (what Maddie has). It's an hour long and Maddie's condition, Pulmonary Atresia, is described at 8 minutes into it. Scroll down to the very bottom of our blog and click under Websites with information on Maddie's CHD on VIDEO: Single Ventricle Options to watch it. It's very interesting.

I feel incredibly grateful for Maddie's wonderful recovery...she's done exceptionally well and we couldn't have asked for more. If you would have asked me while I was pregnant what I was expecting with our heart baby, you would have gotten a different story...I never fathomed it could be this good. I had read so many stories of struggling, fragile babies and Maddie just doesn't fit this mold. We are so lucky and I thank God for my sweet baby and her little heart...He truly gave us one tough, determined little angel! We have been blessed beyond measure. So we continue to walk by faith and trust in His plan...and right now, I'm lovin' the plan!!! Thanks for your continued prayers as well...I know this has helped in the wonderful outcome we've had. Prayer really works! I truly believe in this. Keep them coming!!!

3.68 Kilos, What?

Maddie's appointment went really well yesterday. She weighed 3.68 kilos...that's 8 lbs. 1 oz. with the conversion, a 1 lb. 5 oz. gain in exactly 3 weeks, 21 ounces in 20 days! Children's does everything in the metric system so we're always a little confused when hearing her numbers since we have to convert it. It becomes quite the math war between Bryan and I. We're very happy with this weight then Bryan says, "this is what she probably would have weighed at birth if she had been full-term." Oh well, 8 weeks later she's 8 pounds. The best part is, she's gaining! She's a feeder and a grower, just like we want her to be. No echo was done, just an EKG. Her SATS are hanging around 80, so no change there either. Her feeds are good, volume keeps increasing weekly, she's staying at 24 cal (fortified breastmilk) and eating every 3 hours and also on demand. As for the ride over, we're working on it...the binky usually took care of her "outbursts". We talked a lot to Dr. Vernon about what possible outcomes her heart disease could bring for her future- which is nice to know what "could/could not" happen but can also be very scary. I'm still naive enough to think that when we go to the appointment, the doctors are going to give me a miracle diagnosis of Maddie's heart. I've been taking this one day at a time and yesterday decided to "go there" and found myself in tears last night. It's difficult to accept that she'll never have a normal heart or be cured of her defect...our bodies are just not meant to pump with only 1 side of the heart functioning. Sometimes it's hard to imagine that anything is wrong with her, she's just been doing so well. So I have to hold onto the good and enjoy every day because with all things in life, change happens. We go back for our next visit in 2 weeks. I think I'll hold off on asking so many questions next time.

(Heather (Daniel's mom)- if you read this, would you email or call me? I'd love to get in touch with you and see how Maddie's little ICU roomie is doing! 509-346-2821)